The future of cancer care at home: Findings from an American Cancer Society summit
Authors: Arif H. Kamal, Paul P. Thienprayoon, Marco H. M. Janssen, Lisa A. Lacasse, William L. Dahut, Justin E. Bekelman
Journal: CA A Cancer Journal for Clinicians (2023)

In February 2022, the White House announced the reignition of the Cancer Moonshot Initiative with the goals of reducing the death rate from cancer by at least 50% over the next 25 years and improving the experience of people and their families living with and surviving cancer. A core component of the Cancer Moonshot Initiative is the facilitation of multisector partnerships to solve the compelling challenges faced in cancer care delivery. The American Cancer Society (ACS) has a longstanding tradition of convening partners across the cancer landscape, most notably through conferences, partner meetings, advocacy coalitions, and coalescing of thought leaders through roundtables. For example, the ACS and several patient advocacy organizations, scientific organizations, and pharmaceutical partners came together in October 2022 to launch the new ACS National Breast Cancer Roundtable and the ACS National Cervical Cancer Roundtable as “all-hands-on-deck” coalitions to reshape cancer care.1 These Roundtables aim to both (1) identify the leading challenges in detection and treatment within these cancers and (2) provide expert guidance to providers, patients, payers, and policy makers regarding evolutions needed to increase access and patient centricity of cancer care. Beyond disease-specific issues, the ACS and its partners have also explored topics that span the cancer care continuum. Currently, much of the attention given to innovation in oncology is centered upon creating and delivering a rapidly expanding armamentarium of anticancer treatments. Efforts to develop more novel, personalized, and targeted therapies have been fruitful but also continue to further highlight issues related to access. How treatments are selected and delivered and how outcomes are monitored require additional focus. Furthermore, how such efforts align with increasing calls for patient centricity, meeting patients where they are both figuratively and literally, requires a national discussion. Herein, we describe the findings from the first effort of the ACS in convening national leaders across multiple stakeholders, including the provider, payer, government, and technology communities, to discuss cancer care delivery at home. This ACS Cancer Care at Home Summit convened in Cambridge, Massachusetts, on October 26, 2022, using a “design-thinking” framework to identify the major issues in decentralized cancer care delivery and plan for the next steps forward. The Summit convened 30 national leaders at the Philips North America campus using Chatham House rules during which participants were guided in building a shared mental model, framing the challenges and ideating around barriers, defining opportunities, and sharing findings with each other to determine next steps. To ensure that the ACS optimally used the time dedicated by these senior leaders, untapping the immense potential of the combination of participants in the room, and really getting to actionable outcomes, the ACS invited the Philips Experience Design Team to facilitate the Summit. The Experience Design Team had experience in guiding discussions in this area, leveraging a recent effort in developing a Caregiver Journey Map for Veteran caregivers in partnership with the Elizabeth Dole Foundation and the Veterans Administration. Together, the ACS and the Experience Design Team used conversations with national leaders in cancer care delivered at home to identify four major challenges along with issues that underly barriers: (1) logistics/supply chain, (2) finance/payment, (3) patient acceptance, and (4) regulatory. The participants also identified issues that affect all four of those areas and must be included when ideating around solutions such as health equity and social determinants of health, care-provider acceptance, and data interoperability and ecosystem implications. Participants were split into four preselected groupings to provide the right balance between domain knowledge and “out-of-the-box” thinking in each area. Each group was led by an Experience Design facilitator who fostered communication and captured points as the discussions occurred. Conversations operated under Chatham House rules.2 Facilitators homed in on common themes from the group discussions, and themes were organized (or framed) into multiple “how might we” statements, allowing for the groups to decide which areas were the most critical or needed to be prioritized to successfully create cancer care delivery at home. From there, the group participants focused on solutions that would help solve the selected issue, which would then allow for easier ability to approach the other “how might we” areas. Patient “fit”—“How might we enable the option for patients and clinicians to make site-of-care decisions together?” Data exchange—“How might we seamlessly and securely enable the data/information exchange across care settings, including the home as a care site, in order to make the home a viable care setting?” Supply chain—“How might we think about drugs/agents from the beginning, for safety outside the hospital setting?” Staffing models—“How might we rethink staff workflows to include home as a site of care option?” or “How might we support a more flexible workforce to enable care in the home, efficiently, scalably, and cost effectively?” Convenience—“How might we reduce patients' time spent in transit (frequency, duration) in order to receive care?” Communication—“How might we facilitate the capture, exchange, and evaluation of clinical and nonclinical data and information?” Step 1: Set personal/profile preferences, such as: Opt out of high-tech communications; prefer no-tech or low-tech communications; Opting out of care at home or opt in, with attention to framing of the decision for patients and for clinicians; Patient preference for isolation versus need for community/connectivity; Patient comfort with in-home care; and Is the patient in a care pathway that allows for home cancer care? Step 2: A dynamic itinerary presents choices over time, asking items like: Can I get more done in one visit? Can I opt for a telehealth visit? Can I get my blood drawn or get out-of-hospital imaging at home? What is the most efficient way to deliver care: Can we eliminate this visit altogether, or are additional telehealth consultations or face-to-face consultations required at the care-provider site? Additional considerations: Limit the number of decisions (decision fatigue); and Allow for clinician override. Finally, to realize change, leaders must be willing to challenge the status quo. This recommendation provides a goal to help simplify the multitude of appointments needed by optimizing care plans according to standard care pathways, introduce patient preference for their conversations, and flag opportunities for more streamlined appointment coordination. Together, this vision combines the human touch of patient navigation with optimized workflows that have ardent efficiency. Redefining value—how might we: Preserve provider margin irrespective of site of care? Redefine incentives to match optimal care models? Finance nonreimbursed patient support services? Optimize payer models for care at home? Share cost savings with patients, caregivers, and providers? Total cost of care—how might we: Collect the most relevant cost data? Understand the real and longitudinal costs of care at home? Identify risks to the patient, provider, and payer from any potential adverse health outcomes that might be associated with care at home? Leverage care coordination to shift the cost of care? Expand context—how might we: Enable employer groups to support care at home? Align with community practices for care at home? The group chose to further drill down on the two more critical groupings of the three, provide new “how might we” questions, and provide solutions to those barrier themes: The workgroup used two questions to build a solution around redefining questions: “how might we understand the real costs of cancer care at home relative to outpatient, office, or hospital care?” and “how might we identify benefits and risks to the patients and to the providers associated with cancer care at home?” To do this, the group recommended that the first solution to financial barriers was to ensure information dissemination. This would require all stakeholders to make available to patients and caregivers out-of-pocket expenses and other financial costs associated with care at home relative to care in office, outpatient, or hospital settings. In further detail, leaders need to publish barriers to financially viable models. In addition, those models would be augmented with stories of successful implementation and alignment of incentives. Finally, the group called on the ACS to lead cancer plan decision mapping and criteria for success of cancer care at home programs. To guide solution design, for the total cost of care, the group answered two questions: “how might we, as a nation, finance nonreimbursed patient support services?” and “how might we share cost savings with patients, caregivers, and providers?” The second solution would require leaders to explore, test and validate new financial benefit programs and products. This would include programs for direct financial reimbursement to caregivers delivering home care, home care insurance policy products, and test those benefit programs with the Center for Medicare and Medicaid Innovation and the Centers for Medicare and Medicaid Services. Continuing with the total cost of care, the group provided two additional questions to guide the third solution: “how might we optimize payer models for care at home?” and “how might we redefine incentives to match optimal care models?” There is a need to standardize and develop care goals with the patient and caregivers. Patient stratification should be based on willingness, trust, and ability to receive cancer care at home. If patients and clinicians could make care site decisions together, care pathways would be more efficient and effective. There are opportunities for lay caregivers to extend and expand care with appropriate support. Bundled services (infusion, palliative care, hospice, urgent care) would provide more clarity and enablement with patients and families. Exploration of the soft side, in which moving to the home potentially decreases the patient-to-patient interactions and bonding conversations during chemotherapy infusion. Symptom management, treatment response and patient status monitoring could be provided at home, which would enable improved care and system efficiency. Focusing on enabling care givers would enable better expectation setting, training and adherence, support, and improved care. Focusing on demonstrating projects rather than controlled clinical trials will give us the ability to learn fast. Building off what has been done at the University of Pennsylvania's Penn Center for Cancer Care Innovation,3 the next area to validate is working at scaling across systems and/or employers. Also building off what has been done in care at home in other diseases, such as type-1 diabetes care, with out-of-hospital insulin administration and in vitro fertilization with out-of-hospital subcutaneous hormone administration. From these concepts, the gains the national cancer population could and needs to affect are improved health equity along with improved patient, provider, and caregiver experience. In addition, it is expected to garner increased patient satisfaction, improved care, and lower costs across all stakeholders. These gains became the catalyst for the group's opportunity build statement: “How might we stand up an innovation laboratory to enable cross-collaboration with community-based health systems, payers, and patients?” Affect employer care plans to enable/incentivize the adoption of cancer care at home delivery programs; Shape clinical trials so that care at home is a foundational design consideration for trials; Rethink reimbursements driven primarily by the location of where care is delivered, rather than type of care outcomes; Drive public policy that would enable more care to be delivered across state lines, create opportunities for licensing on a national basis, and make COVID-era practice changes critical to at-home and virtual care delivery permanent; Reduce institutional and vendor barriers for electronic health record use at home; Better leverage the Veterans Administration as a proving ground to develop scalable out-of-hospital cancer care programs; and Influence financial incentives to enable the adoption of out-of-hospital oncology programs/approaches. The two “how might we” statements that the group chose to work on were: “how might we drive change to enable more care to be delivered across state lines” and “how might we rethink reimbursements?” For driving change across state lines, the group found that many of the changes that were implemented in response to COVID would enable cancer care at home and should be extended in order for cancer care at home to be successful. Specifically looking at licensing acceptance on a national basis, having a standard set across state lines allows for cancer care at home to be better implemented for all patients as opposed to different requirements in each state. Together, both approaches allow for more scalable use of expert resources for patients, caregivers, and care providers. In addition, telehealth programs to support home care can be more effectively delivered. Finally, these measures are foundational for at home or out-of-hospital care. The second statement, “how might we rethink reimbursements,” called on national leaders to look for more incentives, and regulations to support those incentives, for more out-of-hospital care with a new reimbursement model that would reflect this new cancer care delivery approach. This would also have to include changes to regulations that enable increased patient preference in how and where they receive care. Finally, these regulatory changes will stimulate innovative delivery practices and the data that support them. The ACS to form a standing task force and communicate a go-forward clinical research plan to assess the health and financial safety of home care; the ACS will be the convener and will foster collaboration to assist in propelling these ideas forward and broaden the discussions to additional key stakeholders, including patient advocates, caregiver advocates, pharmacy, home infusion, home care, risk-bearing health systems, and other supply chain partners, among others; Disseminating a summary of conversations from the Summit to stakeholders, including government and public entities and the scientific community who will have a role to play in helping to translate these approaches into action. The ACS to convene a second summit in 2023 to continue to build on the development of critical path approaches and include a broader set of stakeholders as identified; Collaborate with international teams (e.g., the European Union Beating Cancer Plan) and then cross-share learnings and challenges between the United States and global partners; and The task force will seek partners to develop the cancer care at home innovation laboratory for testing the concepts presented. The successful delivery of cancer care, spanning from prevention through early detection, treatment, and survivorship, as well as clinical trials outside traditional medical facilities, represents a potential seismic shift in oncology. Complementing the recent unprecedented expansion of cancer treatment options, cancer care in the place a patient calls home could help address some longstanding barriers to equitable access to care, particularly for populations marginalized because of geography, travel requirements to get to care providers, proximity to clinical trials, and overall financial burdens of cancer care. We look forward to continuing to build partnerships and further discussions to explore the potential of, barriers to, and solutions to achieve a paradigm shift where appropriate to bring cancer care to the patient rather than requiring the patient to go to cancer care. Special thanks to the Phillips North America team of Marco Janssen, PhD, and the Philips Experience Design Team for donating their resources and time to facilitating this summit. There was no financial relationship between the American Cancer Society and Philips with the Cancer Care at Home Summit. The following individuals participated in the American Cancer Society Cancer Care at Home Summit: Arif Kamal, MD, MBA, MHS, FASCO (Chief Patient Officer, American Cancer Society); Justin Bekelman, MD (Director, Penn Center for Cancer Care Innovation at the Abramson Cancer Center, University of Pennsylvania); Margaret Mary Wilson, MD, MBA, MRCP, FNMCP (Chief Medical Officer and Executive Vice President, United Health Group); David Shulkin, MD (former Secretary of Veterans Affairs); Binoy Bhansali (Corporate Vice President, SCAN Health Plan); Andrew Schutzbank, MD, MPH (Corporate Vice President, SCAN Health Plan); Joy Bhosai, MD, MPH (cofounder/Chief Executive Officer, Pluto Health); Hadly Clark, MHSA (Associate Director, FasterCures, Milken Institute); Patricia Cortazar, MD (Executive Group Medical Director, Genentech, Inc.); William Dahut, MD (Chief Scientific Officer, American Cancer Society); Tara Friedman, MD (President, American Academy of Hospice & Palliative Medicine); Mark Goldberg, MD (Board of Directors, American Cancer Society); Stephen Grubbs, MD (Vice President Care Delivery, American Society of Clinical Oncology); Kurt Merkelz, MD (Senior Vice President and Chief Medical Officer, Compassus); Rakshit Sharma, MD (Chief Executive Officer, Agilix, Inc.); Andrew Hertler, MD (Chief Medical Officer, New Century Health); Rashi Romanoff (Executive Vice President, Elizabeth Dole Foundation); David Steuer (Director, Strategic Design, University of California-San Francisco Health); Inga Lennes, MD, MPH, MBA (Senior Vice President, Ambulatory Care and Patient Experience, Massachusetts General Hospital); Lisa Lacasse, MBA (President, American Cancer Society Cancer Action Network, Inc.); Marcus Neubauer, MD (Chief Medical Officer, The US Oncology Network); Gaurav Singal, MD (former Chief Data Officer, Foundation Medicine); Tawana Thomas Johnson (Senior Vice President and Chief Diversity Officer, American Cancer Society); John Wigneswaran, MD (Chief Medical Officer, Walmart); David Johnson, MD (Chief Operating Partner, Rubicon); Alexis Jackson, MSHA (Operations Administrator, Mayo Clinic); Vitor Rocha (President, Cepheid); Marco Janssen (Portfolio Strategy Leader Oncology, Philips); Kelly Gann, RN, MSN, CDCES (Director Clinical Operations, Philips); Kim Mingo (Vice President, Government Relations, Philips); and Sanjay Gandhi, MD (Senior Director, Philips). Arif H. Kamal reports personal fees from Homebase Medical outside the submitted work and is chief executive officer of Prepped Health. Justin E. Bekelman reports personal fees from AstraZeneca, Healthcare Foundry, Reimagine Care, and United Healthcare outside the submitted work. The remaining authors declared no conflicts of interest.